I'm not gonna miss you.

[Unhappy15]

I have just listened too this Glen Campbell song and I am now beside myself with grief. I have never heard anything that sums up this horrible illness so well.

The person you grieve for has no idea, this was made so real for me when my husband of 38 years asked me on Saturday what my name was, the reality is that over half of your life has disappeared, this illness not only takes them but you as well.

I am so sorry to sound so miserable but after six years living with this illness , the last two with my husband in care ,every day feels like day one. I visit him every day and I always feel I am in denial about his dementia, l keep expecting him to be the person I knew and not this stranger who does not know me.

 

[Grannie G]

Many of us share your grief xx

 

[esmeralda]

It is so very hard. Sending you a big hug.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[Clunchman]

I emphasis with you. My wife of 47yrs is disappearing before my eyes. Life as we knew it is gone. Dementia is an enemy I cannot fight.
You have my thoughts and prayers. So many of us feel the same.

 

[Lilac Blossom]

Unhappy15

My husband has been in care home for a few weeks - vascular dementia - and I too am devastated. We have been married 58 years and he often asks me, what did you say your name is?

I am heart broken that the time came when I could no longer care for him at home and the fact that it takes two people to help him whereas I struggled on my own does not take away my feeling of guilt.

Dementia has invaded our lives and robbed us of so much that we cherished and the life we should be sharing with our loved ones and we mourn that loss.

Sharing your grief

Lilac x

 

[Clunchman]

Lilac blossom you are in the position I fear but I know is coming.sending you good thoughts

 

[Loopiloo]

I share your grief and feel your pain. We were married 58 years last September, my husband died last June. He had vascular dementia 15 years. The last 5 years in a care home. It is one long bereavement and grief. A cruel, destructive disease.

My thoughts are with you

Love
Loo xxx

 

[Casbow]

I read your posts and the tears come. I feel so sad and miserable seeing my husband in the nursing home. He has been there over 3 months now and has no idea who I am. He had another seizure about 8 weeks ago and that took a lot more of what little he remembered. So now I ask him who he thinks I am and he just looks totally blank. It is awful that I can't make him feel a little bit happy when I visit. I don't think my visit matters at all anymore. At least he used to smile when he saw me. Nothing now. Some days he talks a lot , but he doesn't make any sense and doesn't look at anyone. I to wonder if i could have kept him with me for longer. But I know that it wasn't possible.My love to you all. I know how wretched you are feeling.xx

 

[Frank68]

"every day feels like day one."

Unhappy15 - your post - and the subsequent posts from others - echo so well the pain we feel and share...

My dear Sue went into a Care Home on 10th July and every day since I have been wracked by her not being with me. I never knew such grief, that I could cry so many daily tears... The 13th July was our 49th Wedding Anniversary. Last week I went on holiday with my Son and his family - it was lovely to be with them as they live abroad, but it just felt so weird (for all of us) to be enjoying ourselves when our wife / mother / granny was in the Home. And coming back to see her seems to have twisted the knife even more somehow and I have been in bits since Saturday... The guilt monster???

I know she is being looked after well and with kindness - the staff are really sweet with us both and are endlessly patient with her new "hobby" which is becoming known as "Swap my shoes". This involves looking into every room she passes and if a pair of shoes are visible she removes them to another persons room / puts them on herself / leaves her shoes in exchange / hides them in the garden! (We have been missing her newest pair for 10 days , rather nice trainer-style Ecco in soft aubergine leather and white soles - please let me know if you come across them!).

Well, telling that story has cheered me somewhat, and I hope it raised a smile for you too. So off to do a big shop before the family descend for 10 days. I'll put a separate post about that shortly.

Hugs all round to all you people and your broken hearts..xx
Frank

 

[irismary]

Unhappy15 that song had me in tears. My husband has been in a home now for 5 weeks. I am ok during the day as he used to go to day care a couple of days per week so once I can motivate myself to get out of bed its not too bad. Evenings and night times though are so lonely and I feel sad and guilty that he is alone in his room. I know he is nervous when they move him but generally is happy - he laughs a lot so assume he is, and mostly knows who I am but it hurts to walk away. I visit every day, its only a mile away. The mental health nurse told me she is often more concerned about the carers she meets than the pwd as they live in their own world. Take care as we still play a vital role whether its actually providing the day to day care or being the voice of our loved one in care. Casbow I too wonder if I gave up too soon. Social worker was pushing me to have carers, sitters, night sitters - it was the answer to everything but my family, my husbands son, friends, neighbours tell me I have done the right thing. Need to convince myself though.

 

[LadyA]

Unhappy15, I think you spoke for all on here, who have lost loved ones to this dreadful illness.

For years before he was diagnosed, my husband used to make a big joke of saying "what did you say your name was again?" and it used to make me really annoyed when he would just introduce me to people as either "my wife" or "This is Mrs." and not give my name at all! I would be furious with him. It was only much later, that I realised he had forgotten my name and was doing his best to hide the fact.

I remember one evening during his "contented" years at home (when he was on anti psychotics. No contended times before that!), he turned to me and said "What is your name." and I told him. and he said "No, your other name" (meaning the surname) so I told him that. He beamed, and said in astonishment "Ha! The same as mine! No wonder I like you so much!"

 

[Scouts girl]

My heart goes out to everyone who is suffering with their loved ones with this awful illness. It is just such a distressing and guilty long journey we are all facing. My mum is so unhappy living this life. She has recently been admitted to hospital with an infection which has caused yet another deterioration in her dementia. Please just let the suffering end for her now.

 

[Danny320]

Unhappy15

I have just listened too this Glen Campbell song and I am now beside myself with grief. I have never heard anything that sums up this horrible illness so well.

The person you grieve for has no idea, this was made so real for me when my husband of 38 years asked me on Saturday what my name was, the reality is that over half of your life has disappeared, this illness not only takes them but you as well.

I am so sorry to sound so miserable but after six years living with this illness , the last two with my husband in care ,every day feels like day one. I visit him every day and I always feel I am in denial about his dementia, l keep expecting him to be the person I knew and not this stranger who does not know me.

Unhappy

My wife of 47yrs has been in care for nearly two years and every day when I visit I have this crazy hope that one day she will shout at me 'what the --- am I doing here. Take me home so that we can get on with our lives' (My wife barely knows me and cannot speak).

I am thinking of you.

Danny

 

[Barlemo]

Reading these posts is helping me today. I literally don't know what to do for the best. My husband has been diagnosed 5 years now, was reasonably stable for a few years, but has become much worse in the last year or so. He cannot manage any aspect of his life at all and needs constant care, although he is still physically very fit (he is 72). The poor thing is so confused and distressed all the time, and won't let me out of his sight, through fear I suppose. He is hard work and I get exhausted. He goes to a day centre 2 days a week, and I have had respite a few times for a break. But he hates it and just wants to be home with me and the dog. How can I make him leave his world? And yet I know I can't do it alone for much longer. The dilemma and sadness is overwhelming. I wish we could both die.

 

[Frank68]

Reading these posts is helping me today. I literally don't know what to do for the best. My husband has been diagnosed 5 years now, was reasonably stable for a few years, but has become much worse in the last year or so. He cannot manage any aspect of his life at all and needs constant care, although he is still physically very fit (he is 72). The poor thing is so confused and distressed all the time, and won't let me out of his sight, through fear I suppose. He is hard work and I get exhausted. He goes to a day centre 2 days a week, and I have had respite a few times for a break. But he hates it and just wants to be home with me and the dog. How can I make him leave his world? And yet I know I can't do it alone for much longer. The dilemma and sadness is overwhelming. I wish we could both die.

Yes Barlemo - it has been a real help for me too to-day. I do hope that you have supportive friends and family around you at this particular time - you certainly will find support on here as we all do.
Fact is: you have loved and given of yourself to the point of exhaustion and there does come a time when you need the professional and permanent care of a Care Home. Sounds like you are close to that moment... and I expect many of us (certainly me!) would echo your feeling that it might be better if you were both dead and out of all this pain. But reflect on the pain this would bring in turn to family and friends...

Supported by other posts today I went in to visit my Sue: she was cheerful and despite wearing someone else's ghastly shoes her own 2 pairs had been found by the staff!! I cut her fingernails and toenails - still things I can do for her which was lovely. The home has a resident dog btw - so you might put that requirement high on your list when looking for the right place for your husband. Enlist family and a friend to help you search - they will notice things you do not.

Bless you..

Frank

 

[Barlemo]

Thank you Frank. I thought I'd found his ideal place, he's been attending a day centre there. Today I've been told that unless his aggressive behaviour changes they won't be able to have him any more. We're already trying different meds to address this new aggressive streak, but there's nothing else that can be done about it, it's the disease, you can't just tell him off! So it's back to the drawing board looking for a suitable place. God knows what I'm going to do x

 

[Unhappy15]

Stay stong

Reading these posts is helping me today. I literally don't know what to do for the best. My husband has been diagnosed 5 years now, was reasonably stable for a few years, but has become much worse in the last year or so. He cannot manage any aspect of his life at all and needs constant care, although he is still physically very fit (he is 72). The poor thing is so confused and distressed all the time, and won't let me out of his sight, through fear I suppose. He is hard work and I get exhausted. He goes to a day centre 2 days a week, and I have had respite a few times for a break. But he hates it and just wants to be home with me and the dog. How can I make him leave his world? And yet I know I , so we have to stay strong ,can't do it alone for much longer. The dilemma and sadness is overwhelming. I wish we could both die.

Dear Barlemo, I am glad that the posts have helped. I do understand how you feel in wishing you could both die, I have been there. My husband would be so enraged at me allowing him to become this shell of the man he was and the cost, in November the two years of care will be £100,000, that is not what he worked all his life for. The question is What can we do? We have to go on caring, the law and society do not allow any form of opt out for the sufferer. My husbands brother also had dementia and when he saw what his brother has become he said"if that happens to me put a pillow over my face." Easier said than done, so we have to have our strong face for the world and say what we are really feeling to in our posts, but please get help and don't face it all alone for your own sake.

 

[Alicenutter]

Frank68 I wondered who had taken Joseph's shoes. Haven't seen Sue's but I'll keep an eye out for them.

 

[Sammie234]

Husband with Alzheimer/Dementia

I feel so sad for everyone having to go through this and the thought of my OH forgetting my name I absolutely hate. 5years ago we were busy planning what we would do when retirement came around.Well we all know what thought did, thought wrong. No exciting holidays abroad or driving which he has had to stop. The trips to our favourite places all gone now. He starts a project then forgets what he was doing and comes in then goes to sleep. Also I have to keep reminding him to have a shower and change his clothes.